Posted
by
timothy
on Thursday July 08, 2010 @01:40PM
from the umich-law-school-watch-out dept.

cappp writes with this snippet from Scientific American: "This week Berkeley will mail saliva sample kits to every incoming freshman and transfer student. Students can choose to use the kits to submit their DNA for genetic analysis, as part of an orientation program on the topic of personalized medicine. But U.C. Berkeley isn't the only university offering its students genetic testing. Stanford University's summer session started two weeks ago, including a class on personal genomics that gives medical and graduate students the chance to sequence their genotypes and study the results."

"Your water is hard, get a softener. Your dog has worms, get him shots. Your daughter's using cocaine, get her into a rehab clinic. Your wife's pregnant, it's not yours, get a lawyer. And if you don't stop jerking off, your tennis elbow will never get better!"

You do realize that the story is not about privacy concerns, or anything like that, right? It's solely discussing the availability of this optional program. It's all about the scientific aspects of it, not the moral aspects.

Why is it that whenever DNA analysis turns up in something other than a homicide case, it seems that most people automatically thinks privacy? Of course there can be privacy implications and of course these implications are important, but are those implications so negative to counter the benefits that could be obtained?

I, for one, would love to hear what they say about my saliva. Who knows, perhaps they would come up with something funny like I should have studied marketing or something.

but are those implications so negative to counter the benefits that could be obtained?

Yes, they are, because we don't even understand what those implications are yet. For all we know, your DNA could encode your weaknesses to advertising, your political inclinations, etc. That's on top of what we already know, of course.

And all those benefits, who will obtain them? Those who give out the information about themselves, or those who figure out what it means?

Why is it that whenever DNA analysis turns up in something other than a homicide case, it seems that most people automatically thinks privacy?

Because every piece of information you voluntarily give away will inevitably end up in places you couldn't foresee, that's why.

You innocently give it to your school, and it ends up in a corporate database, or being used by the government in ways you didn't think of. The standard scenario is being denied insurance because you're predisposed to a certain illness and are therefore going to cost them money.

It's no different from all of the kids on Facebook who don't fully understand that if you broadcast everything, there can be unexpected backlashes. If you just freely hand over this kind of stuff, you have no idea of what could happen in the future.

Perhaps the most important thing is to start applying some critical reasoning to the information we give out every day, and ponder what might happen in the future. What happens when your DNA becomes mandatory?? It starts seeming like the dystopian future we've all been hoping wouldn't happen.

This kind of stuff never stays as only the reason you were told it was going to be used. So, some of us have a default position of "explain, exactly, to me why you want this, and what you're going to do with it". Would you give your saliva to Wal Mart to qualify for a discount?

I know I sound like a representative of the Tin Foil Hat Brigade, but just because you're paranoid, doesn't mean someone isn't out there trying to get you.

Because every piece of information you voluntarily give away will inevitably end up in places you couldn't foresee, that's why.

Exactly. Once you give up information to anyone, they own and control it. You can't rescind it, ever, for any reason. The new owners of your data however can change their minds any time about who they want to sell it to or share it with. Even if they really mean it when they say your data will be private and secure, that could all change tomorrow.

Assume that the I Agree button is binding on the organization that issues the agreement (whether it's binding on the person who clicked the button is an open question).

If there's a clause in that agreement that says that they can't sell your information to anybody, and they do, then they are in breach of contract. If there isn't a clause in there saying they can change the first clause without giving you a chance to say no, then they can't change the contract on you either. If they give away your info in br

When you go to a university, the school knows your name, your date of birth, your social security number, your address, much of your financial history, and your entire academic record. If you're a traditional-age student (18-year-old freshman) they know much of that information about your parents, too, with the exception of the last bit. Public release of that information would be enough to wreck your life. If you don't trust them to handle sensitive personal information, you probably shouldn't go to sch

I know I sound like a representative of the Tin Foil Hat Brigade, but just because you're paranoid, doesn't mean someone isn't out there trying to get you.

Even the Human Genome Project foresaw this, which is why they lobbied for laws which would prevent genetic discrimination. Which of course our country is not interested in enacting, because genetic discrimination is part of our history, dad gum it!

Also, the program isn't solely about science. TFA says one of the chief goals of the project was to spark the very personal thought process that surrounds choosing whether or not to participate. So they want their students thinking about the privacy implications that will accompany personalized medicine, along with other hot-button issues.

This is good. Maybe the kids will "be OK" and grow up with a mature and nuanced opinion on genetic testing, and how it's inevitable progress will have to be carefully integrated into our cultures and ethics, rather than paranoid kneejerkism.

Depends. Sure they may choose to participate or not, but what is the university going to do with the resulting data? After all, choosing to get a physical and publishing your medical profile are very different things. Participating in university research projects means eventually the study and results are going to be published in one form or another. Protecting the students' privacy while still site unique gene sequences is a very difficult thing to do.

Except that teenagers are not typically concerned with privacy, or the consequences of their disclosures. Just look at Facebook for an example of this. Or the statistics regarding credit card use, debt, and default, among college students. These kids just don't know that what they are doing could have unforeseen consequences.

Furthermore, as this becomes more common place, it will eventually be seen as the accepted norm, and possibly become mandatory. Just look at the statements by young Mister Zuckerber

I didn't know it would be optional. I may have to revise my plans down from "never flying again" back up to "probably going to stop flying soon."

I'd still prefer to fly when I need to get somewhere in a hurry, but I can't afford to fly charter, netjets, or privately, and they keep pushing the the threshold of "flying gets you there faster" to greater and greater distances, with their mandatory "inconvenience stops" and random pre-gate delays.

It is an update to a previous story [slashdot.org] from a little less than two months ago.The piece of news here is that Stanford University also does that.It is a story because of the "what could possibly go wrong" aspect.

"Your Rights Online: Berkeley Says College Attendees' Information Was LeakedPosted by Someone on Thursday September 08, @03:26PMfrom the hopefully-no-dropped-rows-on-the-grade report dept.[ Security ]NoelCoward writes "Thousands of people got a nasty e-mail this morning from Berkely. The comllege was warning people that its attendee DNA database for its semester 2010 event was hacked. If it's not embarrassing enough for a college to get hacked, the e-mail also went out to people who didn't regi

That's kind of pointless....anything can be abused. You know that whole freedom of speech thing? It can be abused (fire in a crowded theater, abusive speech, etc. etc). Baseball bats can be abused. The ability to use computers can be abused. ANYTHING CAN BE ABUSED. If you spend all your time worrying about things that can be abused, you're going to spend all your time being outraged, and become bitter and cynical. Oh, did that describe you?

Seriously though, your argument is extremely similar to those who say looking at porn can lead to looking at child porn. While technically correct, it really doesn't have any affect on the situation at hand other than to raise an emotional issue. "Think of the privacy" is the nerds equivalent of "think of the children." The program is voluntary. There really is nothing wrong with it, any more than there is a problem with Safeway sending you coupons in the mail.

Um.. actually you *can* shout "fire" in a crowded theater. Even if there's no fire, and you're not part of the show, etc.

The government is not allowed to make or enforce any laws to the contrary.

However, free speech does not absolve you of responsibility for the consequences of your actions. If you yell "fire" and everyone exits orderly and there are no injuries, you may be civilly liable for the price of their tickets, and if someone was injured or killed, you might have some criminal liability for that.

I mean, it's a bit paranoid, but imagine:
"I'm sorry, but we've found you too liable to get cancer/something else undesirable. We're giving your seat in the class to this more guy who's more likely to be successful and not dead."

"Oh, your credentials are excellent; but I'm afraid your mortality profile is not what we are looking for. The best alumni donors live long successful lives, then die relatively swiftly, leaving plenty for a generous bequest. The ones that die young and tragically we admit strategically, for their potential artistic value; but the ones that are likely to linger for years under ever costlier treatments just aren't worth it."

"Though, on the other hand... I like you kid, you seem like the right sort, not really your fault that you'll probably die slowly of something from 90 to 97. Re-apply, with an essay that has a bit more stoicism and enthusiasm for the sort of motorcycles that you'll be able to afford just as your reflexes are starting to deteriorate, and I'll talk to some people I know..."

Do we need a "Godwin" variant for Gattaca references every time genetics are mentioned? "Dude! You just Gatted the thread!"

I can imagine your scenario true, if this were mandatory. If the US didn't have strict privacy laws surrounding such information. And if the student, once informed of this, couldn't sue the everlovin' shit out of the University for doing something so utterly stupid.

Plus, what in the hell does a University care whether their students are successful, or even alive? As long as the stu

If the US didn't have strict privacy laws surrounding such information.

Laws change. For example, children conceived from a sperm donation are fighting to have the right to know who their fathers are. Yet, these donors agreed to donate with the knowledge that the law protects their right to remain completely anonymous.

What laws protect a sperm donor's right to remain completely anonymous? Donors may have assumed they would be anonymous, sperm banks may have made promises that they would be anonymous, and in some cases they may have had contracts that said they would be anonymous, but none of those things are laws. There are however, strict laws about privacy and use of genetic information.

Don't know about sperm donors, but a bill is working it's way through the New Jersey legislature that will allow people who were adopted as children to unseal their records... a reversal of the law at the time of the adoption.

Do we need a "Godwin" variant for Gattaca references every time genetics are mentioned? "Dude! You just Gatted the thread!"

Apparently we do. Of course, the paranoid citation of science fiction as an objection to actual science goes at least back to Frankenstein, but Gattaca really seems to have taken on that role in the modern discussion of genetic issues. Jurassic Park often gets thrown in as a lagniappe.

Just in case this isn't clear to everybody: Frankenstein, Jurassic Park, and Gattaca were all fiction. They're stories. They're made up. They didn't really happen. At least Hitler and the Nazis actually existed...

Plus, what in the hell does a University care whether their students are successful, or even alive? As long as the student pays their bills, an ass ends up in a seat and the school makes their tuition money.

Posting as AC so I keep my job. Google "Blackboard Outcomes" and see the answer for yourself. It's able to pinpoint students who are likely to succeed, be grateful, and donate generously back to the school.

On the other hand, if you're really that likely to get cancer and die during the 4 month course I think that would be pretty important information to know about. In fact, personally I would call getting that information but missing out on the class a net win. As long as they don't start using genome studies to test for intelligence, aggression, or work ethic I honestly think that the right laws and regulations can control the situation.

Nah its not for drugs, its a smart, preventative measure...
"Alright students, now we are going to show you a slideshow of students who tested positive for STDs. Make sure you don't sleep with them...*click*"

Incoming freshmen should know that over 100,000 individuals were victims of a data breech at Berkeley's University Health Center in May 2009. The stolen information included gems such as SSNs, self-reported medical history, and information about doctor visits at the UHS -- all dating back to 1999. A more detailed report can be found here: http://www.healthcareitnews.com/news/uc-berkeley-alerts-students-health-data-breach

(I was one of the affected individuals; as far as I know, the school never offered any form of compensation. In a perverse twist, however, my other insurance provider also suffered a data breech a few months later and offered me various credit monitoring and ID theft prevention services.)

For all of Berkeley's excellence, securing health records is apparently not one of them. In light of last year's massive data breech, I WOULD NOT voluntarily provide any genetic information to the school, even if the program administrators claim it's anonymous and secure. Who knows how long the information will be kept around or if the school's IT department will competently secure and protect it over the long run.

Now, are you sure you want to reveal our inner secrets, or would you prefer we go public with the fact you have a genetic propensity for engaging in foreign wars of adventure that only enrich China and Russia?....

I work in Medical Genetics.

Privacy can fail at many levels - intake, transmission, copying.

Also, the genetic screening they do only is useful for certain things. Knowing you have certain genetic markers or gene sequences can be useful, but should never be revealed to insurers or other individuals

Really do we need to be this obsessed with our personal health? Most people out there understand the basic tenets of healthy living such as good food and moderation but choose to ignore them. What is the expected result of yet more indoctrination?

Just because someone eats well, is active, and generally leads a healthy life doesn't mean there isn't something wrong, especially when it comes to women (hear me out). Because women are XX, a flaw in one of those may not ever show up or be noticed, but it could be passed on to a male child. Testing can reveal this problem before it happens. I'm not saying schools, jobs, or insurance should require this type of testing, but in our case, I wish we'd known beforehand.

Have you never heard that phrase before? It has nothing to do with "indoctrination". It is the (more in some areas, less in others, utopian) notion that, with cheap genetic sequencing and similar technologies it will become possible to treat the precise disease condition of the specific patient, in the way maximally likely to work, given their genetic and phenotypic makeup.

A lot of it is basically puffery at this stage; but, for instance, there are already substantial areas in oncology where arguably sim

Problem is that, taken together, these developments will broaden the income gap even more.Sidestepping the obligatory "Gattaca" reference, I'll opt for 'Kode 46' here (_very_ hard to find movie, but worth a watch!).

How is a genetically 'burdened' low-income earner ever to get insurance? Make a career resulting in a high availability, high responsibility job when s/he doesn't have the money to cover treatment / correction of the genetic defect in the first place?

That(in addition to a variety of empirical observations about the relative overhead of private sector vs. state-single-payer entities) is one of the main arguments against leaving medical insurance as a private sector function:

Basically, insurance is supposed to be a risk pooling mechanism. If you have a million people, total medical costs 10 million units; but with an unknown and highly uneven distribution, being able to pay 10 units(or 15, because the insurer is inefficient) with probability 100% beats

Most people out there understand the basic tenets of healthy living such as good food and moderation but choose to ignore them.

After years in patient care, I have to disagree. Oh, there are plenty of people who know what they're doing to themselves and choose to do it anyway, of course (actually, almost everyone does this to one degree or another) but I honestly think "most" is an overestimate... especially when you're talking about 18-year-olds. A very large number of even intelligent, generally well-educated people are deeply ignorant of how their own bodies work. Anything that increases the general level of knowledge, at wha

Wouldn't it have been more cost effective to make the kits available for pickup to the students that wanted to participate. Instead of possibly confusing the issue by mailing the kits to "...every incoming freshman and transfer student."

That give me an idea for one of those companies that peddle stuff to people who don't know any better, like Star Registry or cryogenics [alcor.org] - get people to pay you big bucks to save some DNA samples of yourself on the premise that someday when human cloning is perfected, they can bring you back to life!!! (results may vary).

I can see the commercials, some sad old guy hobbles off to his grave, cut to futuristic world and the same guy is wearing a jumpsuit and a big smile. Voiceover, "It's never too late, so co

The applications of planted evidence at a crime scene are relatively straight forward, and as CSI types learn their craft better, false-positives will be discounted. But "kitchen table genetics" is approaching very quickly. Students need to be aware of these future issues and applications. Then why not have a mandatory 1 Unit Health Genetics class for incoming freshmen/women where they do their on analysis and the data is never stored on campus for any reason?

I think there's a big difference between what Berkeley's doing and what Stanford's doing.

At Stanford, seeing as how it's a graduate level class, the students understand that the purpose is to explore the implications of genetic testing for this kind of application (not unlike a graduate-level MIT class I read about some years ago about wearable computing where the purpose was to explore how wearable computing might affect our lives.) It doesn't bother me too much that they do this, so long as the institutional review board was consulted (if it was appropriate to do so.)

At Berkeley, on the other hand, the Freshman orientation program treats this as a more or less settled societal issue.

At Berkeley, on the other hand, the Freshman orientation program treats this as a more or less settled societal issue.

I suspect Berkeley's approach may be more in keeping with reality. (How many times are you ever going to hear that statement?) The genie's not only out of the bottle, he's moved to a different town and denies ever having lived at that address.

...here's the part I find funny; the article says the students who participate will be able to sequence their own dna. In a semester? For fun? If your going into this field obviously dna sequencing is a very important part of it; but damn! It Is BORING. The genetic language is made up of FOUR (4) letters, and the sentences string on and one for infinity and a day! Think about translating the same joke from one language to another, over and over again, but with a slightly different punchline each time. Over,

I would like to point out that this is the same medical system that lost a bunch of student's social security numbers (including mine) not that long ago. I don't know if I'd trust them with my DNA as well.